My Melmoirs

...but not in a good way.  Greetings dear friends! It's me. I'm still here. Still on IV antibiotics. Still not improving.  My past two CF clinic visits have been disappointing at best. My PFTs continue to decline, my symptoms aren't budging, and we're running out of treatments options. The truth of the matter is, I (along with the rest of the CF community)  desperately need new antibiotics and it's a race against the clock at this point, which is why I raise money for the CFF Walk every May, they're our best hope.  Ideally, I'd stop all antibiotics to give my body a much-needed rest and decrease the chances of catching a superbug, but it's so challenging just to breathe and my lungs are still so angry/hurting that's no longer a viable plan. Not only are my PFTs continuing to decline despite almost SEVEN weeks on IV antibiotics (my longest course ever!), last Thursday were also my lowest PFTs on record. It feels as though my lungs are wrappe...

Well, yesterday I proclaimed my resolve and determination to make the most of what I had and the Universe quickly put me in check. It turns out I won't be doing much of anything the next few days.  Shortly after I published my blog post yesterday I attempted to do a load of laundry when something suddenly "popped" again and I was in so much pain it brought me to my knees. I couldn't take a full breath, I couldn't move, and I certainly couldn't cough (which I've been doing a lot of these days.)  After talking with my CF team it was decided I should head to the BWH emergency department (ED) for "pain management" and to rule out a few things. Out the window went my hopes for the day and off I went.  It was a long day/night with a battery of tests and not many answers. The great news was that there was no blood clot in my lung (PE). There are a few minor issues with my gallbladder, but nothing serious.  The verdict was that I most likely...

In my last  post I wrote about finding my sanity, re-calibrating . Then, I lost my marbles.  There have been a few bumps in the road, but just the fact that I'm able to focus long enough to write this and control my fingers to type this is progress I will gladly take!  It's been more than two weeks since my last post and during that time I've had two CF clinic appointments (both of which my health had taken a step backward ), which has meant two drug shake-ups and a ticket back to side effect hell.  I won't bore you with all the nitty-gritty, but I will say the worst of the adverse effects were: Kidney strain (forcing me to stop one of the antibiotics), "foggy brain" (where I could barely think straight, couldn't hold a thought and had a really hard time finding my words) and involuntary hand movements which included dropping things daily and difficulty typing because my fingers would jump to the wrong letters. Writing one short text would take...